This is a blog I've started to help me deal with the diagnosis of having gastroparesis. It was suggested to me that a blog/diary might help me feel better by venting my frustrations and struggles. Also, I hope I can help others who may have the same thing through my own experiences.
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Thursday, February 20, 2014

The Grieving Process for a Chronic Illness and How to Overcome It

I woke up today to find that the Gastroparesis community on Facebook has lost another GP warrior. It makes me incredibly heartbroken that modern science has no cure for this yet. How many more people have to die before awareness can be spread?

On that note, I decided to write about the grieving process and how to overcome it with a chronic illness. Being told you have a chronic illness can be devastating and shocking, especially when you're told that your stomach will not work as it used to. Everyone goes through the grieving process - grieving for their life they'll never have again because chronic illness changes you. So, let's go through the grieving process together. That way, we can understand how to get through the process.

The stages of mourning and grief are universal and are experienced by people from all walks of life. Mourning occurs in response to an individual’s own terminal illness or to the death of a valued being, human or animal. There are five stages of normal grief that were first proposed by Elisabeth Kübler-Ross in her 1969 book “On Death and Dying.”

In our bereavement, we spend different lengths of time working through each step and express each stage more or less intensely. The five stages do not necessarily occur in order. We often move between stages before achieving a more peaceful acceptance of death. Many of us are not afforded the luxury of time required to achieve this final stage of grief.

The death of your loved one might inspire you to evaluate your own feelings of mortality. Throughout each stage, a common thread of hope emerges: As long as there is life, there is hope. As long as there is hope, there is life.

Many people do not experience the stages in the order listed below, which is okay. The key to understanding the stages is not to feel like you must go through every one of them, in precise order. Instead, it’s more helpful to look at them as guides in the grieving process — it helps you understand and put into context where you are.

1. Denial and Isolation

The first reaction to learning of terminal illness or death of a cherished loved one is to deny the reality of the situation. It is a normal reaction to rationalize overwhelming emotions. It is a defense mechanism that buffers the immediate shock. We block out the words and hide from the facts. This is a temporary response that carries us through the first wave of pain.

2. Anger

As the masking effects of denial and isolation begin to wear, reality and its pain re-emerge. We are not ready. The intense emotion is deflected from our vulnerable core, redirected and expressed instead as anger. The anger may be aimed at inanimate objects, complete strangers, friends or family. Anger may be directed at our dying or deceased loved one. Rationally, we know the person is not to be blamed. Emotionally, however, we may resent the person for causing us pain or for leaving us. We feel guilty for being angry, and this makes us more angry.

Remember, grieving is a personal process that has no time limit, nor one “right” way to do it.

The doctor who diagnosed the illness and was unable to cure the disease might become a convenient target. Health professionals deal with death and dying every day. That does not make them immune to the suffering of their patients or to those who grieve for them.

Do not hesitate to ask your doctor to give you extra time or to explain just once more the details of your loved one’s illness. Arrange a special appointment or ask that he telephone you at the end of his day. Ask for clear answers to your questions regarding medical diagnosis and treatment. Understand the options available to you. Take your time.

3. Bargaining

The normal reaction to feelings of helplessness and vulnerability is often a need to regain control–

If only we had sought medical attention sooner…
If only we got a second opinion from another doctor…
If only we had tried to be a better person toward them…

Secretly, we may make a deal with God or our higher power in an attempt to postpone the inevitable. This is a weaker line of defense to protect us from the painful reality.

4. Depression

Two types of depression are associated with mourning. The first one is a reaction to practical implications relating to the loss. Sadness and regret predominate this type of depression. We worry about the costs and burial. We worry that, in our grief, we have spent less time with others that depend on us. This phase may be eased by simple clarification and reassurance. We may need a bit of helpful cooperation and a few kind words. The second type of depression is more subtle and, in a sense, perhaps more private. It is our quiet preparation to separate and to bid our loved one farewell. Sometimes all we really need is a hug.

5. Acceptance

Reaching this stage of mourning is a gift not afforded to everyone. Death may be sudden and unexpected or we may never see beyond our anger or denial. It is not necessarily a mark of bravery to resist the inevitable and to deny ourselves the opportunity to make our peace. This phase is marked by withdrawal and calm. This is not a period of happiness and must be distinguished from depression.

Loved ones that are terminally ill or aging appear to go through a final period of withdrawal. This is by no means a suggestion that they are aware of their own impending death or such, only that physical decline may be sufficient to produce a similar response. Their behavior implies that it is natural to reach a stage at which social interaction is limited. The dignity and grace shown by our dying loved ones may well be their last gift to us.

Coping with loss is a ultimately a deeply personal and singular experience — nobody can help you go through it more easily or understand all the emotions that you’re going through. But others can be there for you and help comfort you through this process. The best thing you can do is to allow yourself to feel the grief as it comes over you. Resisting it only will prolong the natural process of healing.

The tricky part is, how do you overcome the grieving process with a chronic illness?

When you have CI your relationship with your doctor is second only to your spouse or your parents. Being honest (and you must be honest!) with that person means you need to be able to trust them to hear you. If you don’t have that kind of relationship get a second opinion. Shop around. In my CI career I fired three highly recommended specialists because they were jerks. Thankfully I’ve also had wonderful physicians who literally saved my life and my mind.

2. Define your circle of support carefully.

Isolation leads to depression and it is so easy to isolate when you feel lower then dirt. People may surprise you. Peripheral friends may step up and be terrific support while others you thought you could count on cave. If someone inside the circle asks, “How are you?” Tell them the truth. When someone outside the circle asks, lie, say, “I’m fine” and change the subject. Too often they can’t handle the truth and they suck any energy you have taking care of them. A patient of mine found her mother would get hysterical at any medical news so it was better to keep her at arms length.

If someone asks if they can help say yes. Accepting help is a gift to them. Trust that someday you will be on the giving end. My patient’s mother could do laundry for her and that made both of them happy. One big way someone can help is to go to doctor’s visits with you. The extra eyes and ears take the pressure off you when the news is emotionally laden and important, even if the news is good.

3. Protect your health as you would a small child.

You are more than your illness. That part of you that functions well needs you to advocate for it. Of course there are the basics of getting plenty of sleep, exercise and eating smart. In addition to all that I suggest learning a new set of signals that are your clues for when you’re wearing your health thin. For me it’s lowered ability to concentrate, tension in my neck and shoulders, irritability and loss of my usually dependable sense of humor. When those yellow lights are blinking, it’s time for me to stop, assess and make changes. When I ignored those signals I relapsed and looking back I can see where I ran the red lights. So be a fierce protector of your health. Set limits and find the courage to say ‘No’!

4. Create a new measuring stick.

Our self-esteem lies in the standards with which we measure ourselves as we go through life. To thrive with chronic illness, throw out the old and rethink your standards. If you are used to defining yourself by your 50-hour workweek, for instance, you may feel lousy about yourself because now you can’t manage it.

Finding a new standard can be tough. One technique I use with patients is to have them ask themselves what is reasonable? Is it reasonable to do it all yourself or is it more reasonable to delegate? Is it reasonable to register the kids in travel hockey or is it more reasonable to stay local? This is where a lot of courage is needed. Courage to address old pressures to be a certain way and to imagine value in doing things differently. In my own life and in my work I find that those who thrive despite chronic illness creatively find opportunity in their new reality.

5. Have dreams and strive for them!

You had ambitions to get a degree or promotion, to see the world or save it, to get married and have kids. Now you’re thinking, do I have to give that up? No, you don’t. It’s imperative for your spirit that you have goals for living, big and small.

What might change with the reality of chronic illness is the path and timing. I wanted to have kids and was told for years, ‘No.’ I had to adjust to the idea of life without kids or adopting. Then in my late thirties, my doctor said, go for it. After a scary, thrilling journey, today I have two thriving teenagers.

As we reach for the stars let’s appreciate the ground we stand on. Mindfulness has a real place in keeping depression at bay for everyone. Sometimes our dreams are right before our eyes.

It might seem counterintuitive, but according to experts, you can live a full and meaningful life despite having compromised health. Millions of people living with serious chronic conditions have used their struggles as a springboard for spiritual, relational and emotional growth. Many have gone on to launch new ministries, careers, and friendships.

"Eventually, you adjust to a new normal," explains Lisa Copen, founder of Rest Ministries, Inc™*, an organization that serves the chronically ill.

According to Copen, once you find the right doctor, medication and support, you can learn to cope successfully with your limitations—as long as you remember that you're not just dealing with your physical well-being; instead, you're learning to cast your relationships, emotional and spiritual health and physical health in a different light.
Adjusting Relationally

Couples should devote as much time to managing their relationship as they do to managing the illness, advises Deborah B. Dunn, Licensed Marriage and Family Therapist.

"Find a third-party, outside of the family, who is supportive, encouraging and able to help you process the changes," she says. "Don't let your illness define you or your marriage."

She also advises against telling children that "everything will turn out fine."

It may not.

"Don't make promises you can't keep," she says. "I've talked to so many children during the years who have gotten so angry with God because they think He fell down on the job. Be honest without being graphic."

Family relationships are not the only ones to suffer. Friends, co-workers, neighbors—even people from church, may not know how to respond to the "new" you. Some may reject you because they're uncomfortable with your physical or emotional pain.

Copen also advises relying on a confidant who understands what you're going through.

"If you're having trouble finding support at the local level, use the Internet to find the help and support you need. In addition to Rest Ministries*, organizations like Joni and Friends* and Dave Dravecky's Endurance* offer tools and practical resources to guide you."
Adjusting Emotionally

For many, healthy grieving, which includes periods of shock and numbness, denial, anger, disorientation, and intense emotional pain, is the greatest challenge. Experts say it is essential that you engage your grief reaction. If you do not, they warn, it will surface in other, more destructive ways.

Here's another important point experts want sufferers to remember: While, the "grieving timetable" is different for everyone, changes in your condition may provoke additional losses and seasons of mourning. That's why it is important to practice patience with yourself, eat well, get sufficient rest, express your feelings—journal, cry, sing, and talk to others about your pain.

Scott Twentyman, M.D., a practicing psychoanalyst in the Washington, D.C. area, urges the chronically ill to watch for signs of depression and to seek professional help when needed.

"Trouble sleeping, loss of appetite, weight gain or loss, loss of interest in activities that were previously enjoyable, lack of energy and certainly suicidal thoughts… all are indications of clinical depression."

And if you are depressed, don't rely on medication alone.

"Treatment for depression is more effective when medication is used in conjunction with therapy," says Dr. Twentyman.

Here are some additional tips that will help you adjust to life with chronic illness:

Educate yourself about your condition.
Recognize your limits and learn to say no.
Accept help from others.
Build fun into your life.
Focus your physical and emotional resources on those things that matter most.
Share your gifts and talents with others.

Facing the Future

One of the biggest fears those living with chronic illness face is about the future. While no one can predict it, the experiences others have faced can help it if we have to deal with chronic pain or illness.

"My health challenges…have taken my life in a direction that I would never have gone with the illness."

After her diagnosis, Trish built a home-based business that gives her flexibility and allows her to manage her condition.

"It's been a blessing," says Trish, "and I thank God daily for where I'm at in life today."

Then there's Linda Aufrance. She suffers from Lupus, but she believes her health issues has taught them compassion and sensitivity for those who are hurting; it has had positive affects on her marriage.

"As hard as it has been, my illness has brought me and my husband closer," she says.

Trish and Linda still struggle with physical pain. Still, they live rich and meaningful lives. And so can you.

It can be difficult to see God's hand in our pain. But we can be confident that, in Christ, there is always hope for your future.

When you accept your chronic illness and realize your limitations, it's almost like a weight lifts off of your shoulders. You can then find ways to cope. With myself, I've joined support groups, started this blog, started groups and pages on FB to get my illness out there, and I've done fundraising for it. All of this has helped me cope with having a chronic illness. I've come to terms with the fact that I may never go out to eat with my friends any time soon, but I'm happy to know that my friends and family love me and care for me no matter what. Unconditional love is almost as good as a cure!

NOTE: If you are interested, I have a Facebook Page. I'm trying to reach 500 Likes. If you want motivation, inspiration, and just straight up positivity, here's the link: https://www.facebook.com/emilysstomach